Insurance

Access to health care varies throughout the world. Healthcare insurance options also differ widely. When you are at risk for a hereditary syndrome, the situation may become more complex.You may want to consider getting life insurance. It is important to review this option before having a gene test gene test for the Birt-Hogg-Dubé syndrome. In some countries, insurance companies can deny you coverage if you have a hereditary syndrome. This is also true in some countries with nationalized health plans. Genetic discrimination is an issue that is very closely tied to insurance issues.

Do you have any experiences with BHD related life or health insurance issues in your country that you would like to share? Why not post your story on our forum and discuss it with other members of BHDSyndrome.org.

United States

Health Insurance in the U.S. for those who are insured

When you have or are at risk of having a hereditary syndrome that has the potential to lead to long term healthcare expenses, it is vital that you keep uninterrupted health insurance coverage if it is at all possible.

Most people in the United States who have health insurance get this insurance through their employers. If you lose, quit or change your job, do your best to maintain your health insurance continuously, even when you are unemployed. You may be able to do this through COBRA.

This can be very difficult to do since health insurance can be very costly.

“More than a decade of research on the human genome has yielded a wealth of information. Scientists have mapped and sequenced the genome, identified individual genes or sets of genes that are associated with diseases ranging from Alzheimer’s to diabetes and certain forms of cancer, and developed genetic tests to determine an individual’s predisposition for some of these diseases. Developments and discoveries like these – and others likely to come in the years ahead – offer hope that many deadly illnesses can be diagnosed, treated and perhaps even cured both earlier and with better results than are now possible.

By learning more about their genetic makeup and susceptibility to certain diseases, people now have more choices, and potentially more control, when dealing with their health and future. Genetic information may lead people to ask their physicians to screen them regularly for certain diseases, to take preventive measures earlier in life, or even to rethink their reproductive plans and choices.

But genetic information can also be misused. It can be used to discriminate against people in health insurance and employment. People known to carry a gene that increases their likelihood of developing cancer, for example, may get turned down for health insurance. Without health insurance, it may be impossible for some people to get treatment for a disease that could be fatal. This may lead some people to decide against genetic testing for fear of what the results might show, and who might find out about them. It also could lead some people to decline participation in biomedical research such as studies of gene mutations associated with certain diseases that examine the history of families prone to those maladies.

People have reason to be concerned. Employer-sponsored health insurance plans in the private sector cover more than half of all Americans. Numerous reports in the news media and from expert groups have already uncovered instances where people were denied health insurance or coverage for particular conditions based on genetic information. In one case, a young boy, who had inherited an altered gene from his mother making him susceptible to a potentially fatal heart condition, was denied coverage by a health insurer when the boy’s father lost his job and group coverage, and then tried to buy new insurance.

The Health Insurance Portability and Accountability Act (HIPAA) of 1996 provided the first federal protections against genetic discrimination in health insurance. The act prohibited health insurers from excluding individuals from group coverage due to past or present medical problems, including genetic predisposition to certain diseases. It limited exclusions from group plans for preexisting conditions to 12 months and prohibited such exclusions for people who had been covered previously for that condition for 12 months or more. And the law specifically stated that genetic information in the absence of a current diagnosis of illness did not constitute a preexisting condition.

On the other hand, HIPAA did not prohibit health insurers from charging a higher rate to individuals based on their genetic makeup, prevent insurers from collecting genetic information or limit the disclosure of genetic information about individuals to insurers. Nor did it prevent insurers from requiring applicants to undergo genetic testing.”

Courtesy: National Human Genome Research Institute. Information on the National Human Genome Research Institute (NHGRI) Web site genome.gov is in the public domain. Public domain information may be freely distributed and copied.

For those who are uninsured

It is very important that you keep track of all your medical records. You may already have a system in place; if not, it is a good idea to find a place to organize and file all your bills, records of payment (paying by check gives you a paper trail), health insurance claims, and letters explaining health insurance reimbursements. Filled prescriptions, hospital and clinical bills, and records of contact with your insurance company should also be saved.

It is extremely difficult to deal with health care issues if you are uninsured. If it is at all possible, get coverage through your employer. Larger companies may be more likely to offer coverage than smaller ones. Check your job benefits carefully. Also check to see if you belong to any organizations that may offer health insurance. Look for an independent insurance broker, one who can contact several companies to see what policies might be available for you. This is easier than trying to contact the companies yourself.

If you have a pre-existing condition and need an individual policy (not one that you get through an employer), an insurance company can deny you coverage, or only offer coverage for certain conditions. They may offer you coverage but set the premiums so high it becomes difficult to pay them.

Some states have passed laws requiring that health insurance be available to people who have pre-existing medical conditions and have not been able to get private health insurance. These are called guaranteed issue plans. Sometimes these people were offered insurance but the cost was too high. Thirty four U.S. states have programs that offer insurance plans sponsored by the state. Sometimes these plans are more expensive than the cost of getting health insurance through an employer, but there are attempts to keep the cost down. Coverage and cost varies from state to state.

You may want to investigate your state’s health insurance laws:

Life insurance in the U.S.

People who have BHD may have some serious health issues to face. Not all who have the Birt-Hogg-Dubé syndrome will get the most serious symptom, kidney cancer. However, having and maintaining continuous health insurance is very important.

Several kinds of life insurance are available – whole, term, variable and universal. It is unlikely that the Genetic Non-Discrimination Act will change the provisions that life insurance companies have to follow. In other words, you could still be denied life insurance even after the Act goes into effect. The exception is the automatic life insurance Likewise, you may be denied life insurance if you have cancer. This is why it is important to make choices about life insurance as early in life as possible.

For more information regarding living benefits from life insurance, please visit the American Council of Life Insurers Web site.Explore your eligibility for Medicare, which covers most people who are 65 or older, or who are permanently disabled and have been receiving Social Security benefits for approximately 2 years.

See if you are eligible for state or local benefits, such as Medicaid if you are in a low-income bracket or are unemployed. If you are currently employed, don’t leave your job until you have explored insurance conversion options through your current plan. Many group plans have a clause that allows people to convert to individual plans, but premiums may be much higher. These individual plans usually must be applied for within 30 days of termination.

In looking at insurance options, be aware of differences in coverage. Ask about choice of doctors, protections against cancellations, and increases in premiums. Find out what the plan really covers, especially in the event of catastrophic illness. What are the deductibles? (Sometimes higher deductibles go along with better comprehensive coverage.)

If you feel an insurance company has treated you unfairly, contact your state insurance commission for further information.

Risks Associated with Genetic Testing: Health Insurance Discrimination or Simply Business as Usual? by Karen K. Steinberg, Ph.D.

To follow

  • Health Insurance In Canada
  • Life Insurance in Canada
  • Health Insurance in EU Countries
  • Life Insurance in EU Countries